Something I saw on the news

[Jules A]

This is the kind of irresponsible press the press should be ashamed of.
People die of COMPLICATIONS of the disease as with any other, as posted on following threads.

I disagree that the press was irresponsible. To me it is splitting hairs to discern between the complications vs the disease itself as a cause of death.

For example it would be unlikely that Tawanda's Mother, who was what in her early 40s?, would have ever contracted pneumonia let alone die from it if not for MS.

I'm not sure why there is such a push back from the MS community with things like our lifespan and the genetic implications of having this miserable disease. It stinks, trust me I understand, but it is what it is, and I think acceptance does buy some peace.

[Goldfinch]

...Incidentally, life insurance companies seem to know more about our lifespan than our doctors as they want nothing to do with us!

Actually...in the case of life insurance I had two bids for a policy for life insurance and all they did was lump me in with the smokers. Y'all can email or private message me if you would like to know the names of the companies. They've been pretty cool about it.

[loopey]

I just ordered a copy of my mothers death certificate even though she died in the early 90's at the age of 71. Her cause of death was chronic aspiration and MS.

I think we're splitting hairs here. We cannot predict our futures or life span anymore than someone without MS can.

My son had stage 4 melanoma over 10 years ago. He is alive and well today which is a miracle.

I am more afraid of progression than death and yet I have a chance where my mother did not.

[Fed Up]

Something to be thankful for, i bought my life insurance when I was 30. Not knowing I would have this disease, just knew if I had something that became so progressive that would kill me or was, I would be Euthanized; so I got the policy that pays off like Harrah's.

I don't gamble, but i like to be paid when I win!

My policy has gone to at least 4 different carriers over the years.

IDK; 'splitting' hairs seems to be the bottom line. I believe it is death due to MS Complications; but we wouldn't have complications if we didn't have MS.

Does a healthy person's death certificate say; death due to Old Age; heart failed? IDK, never read one! fed

[rdmc]

I am more afraid of progression than death and yet I have a chance where my mother did not.

In one of these threads discussing the semantics of "death" and MS, I posted a link to what neuros are calling SUDMUS, and basically there is the rare possibility that we could experience sudden death from MS...usually this has to do with a medullary lesion that becomes active, and the person dies because of sudden autonomic failure, like a cardiac arrhythmia, etc.

If it were up to me, which it isn't, I'd take the sudden death over the slow progression toward total disability. As I said, not something we have any say in, so it is what it is, and in the "immortal" words of Doris Day Que Sera Sera.

[marisb]

Insrance LOL

I've also run into that situation with insurance cos. What a not amusing joke. They don't care about us when we're alive !

[misslux]

I disagree that the press was irresponsible. To me it is splitting hairs to discern between the complications vs the disease itself as a cause of death

I agree! I actually think the media downplays how serious MS is. Before I had MS, I had no idea how awful AND debilitating AND progressive it can be.

I mean look at the Gilenya commercials showing young and vibrant people in the ads. Based on that you'd think oh, just one pill makes it all better. Whereas in reality, it is just an awful disease.

[Jules A]

I agree! I actually think the media downplays how serious MS is. Before I had MS, I had no idea how awful AND debilitating AND progressive it can be.

I mean look at the Gilenya commercials showing young and vibrant people in the ads. Based on that you'd think oh, just one pill makes it all better. Whereas in reality, it is just an awful disease.

Well said!

It is a horrible disease and I think people prefer downplay it by framing it as having a "positive attitude". Truth is I bet deep down they know the truth and are as terrified as I am of our likely prognosis.

[dyin_myelin]

I agree! I actually think the media downplays how serious MS is. Before I had MS, I had no idea how awful AND debilitating AND progressive it can be.

I mean look at the Gilenya commercials showing young and vibrant people in the ads. Based on that you'd think oh, just one pill makes it all better. Whereas in reality, it is just an awful disease.

I have to say that even though Gilenya's efficacy isn't that great, their brushed aluminum BPA free travel mug is far superior to Biogen's. Now, Biogen's is BPA free too, but it is plastic and moreover, it leaks. I really wanted to sport Bio's product as it's working so well, but Gilenya's logo is more discrete and doesn't scream, "I have MS!" Nice colors too. Seizing, puking, and aspirating my own vomit is not too high a price to pay for style, discretion, and the fact it does, indeed, fit in the cup caddy of my car (when I'm not too dizzy to drive it). Plus, free.

[misslux]

LMAO! Hilarious!

[ZSP]

Actually...in the case of life insurance I had two bids for a policy for life insurance and all they did was lump me in with the smokers. Y'all can email or private message me if you would like to know the names of the companies. They've been pretty cool about it.

I don't know how to pm you...would you please pm me with the name of the companies you posted about? Thanks.

[Seasha]

I don't know how to pm you...would you please pm me with the name of the companies you posted about? Thanks.

ZSP - the PM feature is not available here on MSWorld. However, you can place your email in your in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details. Do so at your own risk.

[ZSP]

ZSP - the PM feature is not available here on MSWorld. However, you can place your email in your in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details. Do so at your own risk.

Thank you.

[Tawanda]

I agree! I actually think the media downplays how serious MS is. Before I had MS, I had no idea how awful AND debilitating AND progressive it can be.

I mean look at the Gilenya commercials showing young and vibrant people in the ads. Based on that you'd think oh, just one pill makes it all better. Whereas in reality, it is just an awful disease.

Unfortunately, I knew the severity of MS because my mother had it. To look at these ads, you would think that science has come a long way since she was diagnosed, when in reality, I think progression, fast or slow, is more about dumb luck than any so-called treatment out there.

Sorry to be such a Negative Nelly, but for a lot of us here, it is just an "an awful disease". 10 years with this thing and I have become a huge skeptic of any and all new MS treatments that have come down the turnpike. I guess an honest campaign, "try this new and more expensive MS junk...we can only prove that it has a bunch of side effects and not that it actually works" is not going too sell too many drugs!